Tag: trauma

TSC Talks Presents: Green Nurses Compilation- What is a Green Nurse?

TSC Talks Presents: Green Nurses Compilation- What is a Green Nurse?

Green Nurses are the bridge between alternative and traditional medicine and have helped transform and provide legitimacy and respect for cannabis as medicine and other alternative options as well! We are grateful for collaboration and support on this content arc from Sherri Tutkus of GreenNurse Group. For our first episode in this series, we’ve compiled a retrospective from past Green Nurse podcast guests giving a brief narrative on why they became a green nurse. This episode includes Marissa Fratoni of Holistic Nurse Mama, Janna Champagne of Integrated Holistic Care, Sherri Tutkus of Green Nurse Group, and Dedee Culley of 2 Leaf Nurses.

 

Marissa Fratoni: Nurse, blogger, freelance writer at Holistic Nurse Mama, and Registered Yoga Teacher at Central Mass Yoga And Wellness. She is a wealth of information and insight on cannabinoid therapeutics holistic medicine and integrative health.

Marissa Fratoni’s Background Story: 7:38

Visiting Nursing: 8:34

How She Got Into Cannabis: 9:16

Another Perception of the Plant, Seeing Miraculous Changes: 9:58

Cannabis helps Detox from Addiction: 10:50

Full Podcast Episode with Marissa Fratoni: https://tsctalks.com/tsc-talks-guest-marissa-fratoni/

https://holisticnursemama.blog/

 

Janna Champagne– Founder at Integrated Holistic Care. Janna’s introduction to the cannabis industry began as a cannabis patient when she suffered a health collapse in 2012. She credits cannabis for helping to reduce her reliance on harmful pharmaceuticals, and for supporting her ability to regain optimal health status. Janna is also known for her daughter’s cannabis/Autism success story, which published on the cover story in a nationwide industry magazine in 2017.

Cannabis Helped Her Daughter: 14:06

Cumulative Long-Term Impact of Pharmaceuticals: 14:53

The Mental Health Industry- Wild West: 16:53

Pharmaceuticals Side Effects: 18:29

Risk VS. Benefit: 19:45

Reversals of Dementia, Improved Behavior in Autism, Improved Function, and Quality of life: 20:06

Gut and Brain Connection: 20:42

Pharmaceutical Driven: 21:21

Full Podcast Episode with Janna Champagne: https://tsctalks.com/tsc-talks-guest-jenna-champagne/

https://jannachampagne.com

 

Sherri Tuktus– Sherri Tutkus is the founder and CEO of GreenNurse Group, Nursing Director at Irie Bliss Wellness and host of GreenNurse on the Go Radio Show. Sherri is a cannabis nurse, patient and advocate. She earned her Bachelor’s in Science and Nursing from Boston College. She is highly skilled Registered Nurse with 30 years’ practical experience in various departments within the hospital and home setting. She is utilizing her expert nursing skills as a medical center specialist, clinical nurse liaison and educator to bridge the gap between patients and the cannabis community. Sherri has been educating and implementing holistic integrative healing modalities within her practice for over 20 years. She educates on the endocannabinoid system and the safe utilization of cannabis at dispensaries, hospitals, clinics, patients’ homes and she regularly does pop up events, seminars and expos. Sherri is an international speaker and she has contributed to the writing of the first cannabis nursing textbook with her cannabis nurse colleagues that will be available in nursing schools across the country. Sherri is a member of the American Cannabis Nurses Association and founding member of The Cannabis Nurses Network and was nominated as one of two nurses for “Health Professional of the Year” for the 2020 New England Cannabis Convention. Sherri brings passion and purpose to her work teaching bio-psycho-social-spiritual healing using cannabis as a tool.

Background History- Pseudomembranous Colitis: 21:55

From Being a Nurse to Being a Patient: 24:00

Polypharmacy Journey: 25:34

Medical and Pharmaceutical Trauma: 27:04

Drain of Despair: 29:02

Cannabinoid Therapeutics Comes to the Rescue: 29:49

Full Podcast Episode with Sherri Tuktus: https://tsctalks.com/sherri-tutkus-2/

https://greennursegroup.com/,  https://iriebliss.com/

 

Dedee Culley: Has over 20 years of nursing experience and is the co-owner of 2 Leaf Nurses, which provides alternative & holistic health services from Springfield, Missouri. Culley loves home health for its opportunity to connect with patients and their environment. She is incredibly blessed and she was able to gather up courage and strength to pursue her passion in nursing while stepping out of the ordinary medicinal ways of these modern days and encourage others to be safe and successful at taking care of their bodies from the inside out with natural approaches. She has a loving attitude and an open mind to seek and research various holistic methods to reach a significantly positive result. She has also dealt with personal health issues within her family and has seen significant changes when she chooses to ask questions and be in the loop of the available options and their side effects.

Background History: 30:22

First Time Questioning Medicine: 30:53

Don’t Apologize for Questioning: 34:27

Got Into Nursing: 35:06

Home Heath: 37:00

Full Podcast with Dedee Culley: https://tsctalks.com/podcast/show-notes/tsc-talks-guest-dedee-culley/

https://www.2leafnurses.com/

TSC Talks Guest Chris Chambers

TSC Talks guest Chris Chambers is a fascinating man.  I recently had the honor of interviewing the Purple Heart Vietnam Vet who speaks out about the need for medical cannabis for veterans. Chris is a Public Figure For Veterans, Founder of Vet Meds Matter, Motivational Speaker, Mentor, Advocate.  I crossed virtual paths with him when I saw him on a video Mike Robinson posted during the 100,000,000 million mg CBD giveaway and was impressed with his story. In our first conversation, (of which it took 3 to get this audio!🙃 ), Chris mentioned being a Quaker. I immediately felt a connection as my own father was immersed in this philosophy/denomination towards the end of his life. The tenets of kindness towards all, and finding value in every human being despite any external circumstances were a huge part of his mantra. The same can be said for Chris, which you will hear echoed throughout this episode. Chris-Chambers-Military

TSC Talks guest Chris Chambers is a generous, humble, living piece of art! He gave us details on his life since his early childhood, through his experiences in the army, and through many rough patches that he’s been through. He truly has shocking experiences, and now he is happy to be breathing and being able to do good in this world. A truly humble human being that can be considered a living miracle.

He has an extensive resume which includes Sr. Chief Operations Director at VAONC, business owner at Aqua Business Development, Sr. Vice Commander at LifeCall MediAlert Inc., former Superior & Federal Court Officer at County Legal Services of Santa Clara County, former President/CEO at Top Priority Solutions, founder of The Water Chamber, and studied Computer Science and Technology.

Here’s a blog about Chris Chambers written by Mike Robinson Founder, Global Cannabinoid Research Center, Cancer Survivor, Cannabis Advocate and TSC Talks LLC Director of Research and Developlent: Purple Heart Recipient Chris Chambers Talks Cannabis and Veterans- Wounded Physically In A Brutal War & Fighting A System That Refuses To Properly Help P.T.S.D., Cannabis Is His Medicine To Set His Mind At Ease:

Topics Discussed

Early family History and Civil Air Patrol at Age 14 [0:33]

Army [2:41]

Unwelcomed Back [4:45]

Unwelcomed Home [5:54]

Remorse Wanted him Dead [6:38}

Abducted [10:43]

His Journey Taught him to be a Humanitarian [16:00]

New Beginning [16:26]

Proposed a Bill to Congress [17:35]

Saving Thousands of Lives each Month with “Life Call- Life Alert- Lifeline” [18:34]

The Water Chamber [20:12]

100% Disability for Extreme PTSD [29:21]

64 Pills a Day vs. Cannabis [29:59]

From Federal Officer to Truck Driver [31:51]

Another Crumbling Accident [34:28]

Cannabis Led him to Mr. Peron [36:01]

Cannabis Regrowing Bone Marrow [36:18]

A Living Piece of Art [37:27]

Cannabis’ Continuing Impact [38:23]

 

You can find all of our podcasts at https://tsctalks.com/podcast/

Visit https://thesourcecannabinoids.com for hemp derived cannabinoid topical products formulated by Mike Robinson, Founder, Global Cannabinoid Research Center.

TSC Talks Guest Marc D. Lewis, PhD

TSC Talks guest Marc D. Lewis, PhD, “If we are to understand anything so complex and troubling as addiction, we need to gaze directly at the point where experience and biology meet. Because that’s the bottleneck, the linchpin, where human affairs are cast and crystallized. That’s where the brain shapes our lives and our lives shape the brain”

I had the honor and pleasure of interviewing Marc. D. Lewis on TSC Talks to discuss his life and work with the focus of the conversation on how he developed his understanding of addiction, and how he debunked the more traditional theory that addiction is indeed a disease. Marc is a neuroscientist, recently retired full professor of developmental psychology, at the University of Toronto from 1989 to 2010, and at Radboud University in the Netherlands from 2010 to 2016. He is the author or co-author of over 50 journal publications in psychology, cognitive science, and neuroscience, editor of an academic book on developmental psychology, and co-author of a book for parents. More recently he has written two books on the science and experience of addiction.

I heard Marc on a podcast several years ago after reading his blog, https://memoirsofanaddictedbrain.com. I was a few years into recovery from substance abuse addiction and struggling with many of the traditional modes of treatment. As a parent of children with some extra challenges case managing their TSC related care post-divorce, I was buoyed when I heard Marc discussing his 2nd book, The Biology of Desire, Why Addiction is Not a Disease (2015), which claims “the scientific facts don’t support the disease model of addiction. Rather, addiction, like romantic love and other emotionally loaded habits, develops through deep learning and limited alternatives. Combining scientific views with intimate biographies of addicts who recovered, the book also shows how addiction can be overcome, through self-directed change in one’s goals and perspectives.”

Having felt more validated in my own personal experience knowing that there were multiple factors personally at play that led to my own demise, I went and started reading more of his blog and research. Viewing myself as victim of a disease while at the same time having to maintain a somewhat subservient stance to wrangle the services necessary to help our family recover from years of ongoing traumas, was almost too much to bear. I simply could not accept the idea that I had a disease and as I chose to navigate away from that model of understanding, including delving into cannabinoid medicine, I was finally able to intimately integrate past, present and future in a way that I could truly climb out of many self-limiting beliefs reinforced by this notion. Clinging to the disease model of addiction was limiting and I have to say, Marc’s work has made a tangible impact on my own and so many others who have had less than typical experiences for which the confines of traditional recovery methods led to deeper despair and frustration. I’m including a bit more information from Marc’s bio along with some quotes that highlight might be helpful and lead you to download and/or at least listen to this fabulous chat.

Beginning during his undergraduate years in Berkeley, California, Marc experimented with a large variety of drugs, eventually becoming addicted to opiates. He moved to Toronto in 1976 and began to study psychology at the University of Toronto, but at the same time encountered serious personal and legal troubles resulting from his addiction. After quitting drugs at age 30, he continued his graduate education in developmental psychology. He received a Ph.D. and license to practice psychology in 1989, and he was appointed to the position of assistant professor the same year.

Around 2006, Marc’s research led him back to addiction, this time as a neuroscientist studying the brain changes that accompany addiction and recovery. His 2011 book, Memoirs of an Addicted Brain, blends his life story with a user-friendly account of how drugs (from LSD and alcohol to speed and heroin) affect the brain and how alterations in brain function help explain addiction.
His more recent book is The Biology of Desire: Why Addiction is Not a Disease (2015), and it has stirred controversy among people with addictions, their families, addiction researchers, and treatment providers.”

“The fact is that we in the West embrace the logic of pigeonholing problems, giving them unique names and finding technical solutions-the more targeted the better-for alleviating them. That is, to a T, the logic of Western medicine.”

We also discussed the impact of social distancing and quarantine measures on those that might be struggling with addiction during this global pandemic. Please note Marc’s links to social media as well as multiple articles, videos that might be helpful and illuminating for anyone currently struggling.

“What often goes together with addiction is a kind of narrowing of the social world, you get your needs for soothing and satisfaction or pleasure from a substance. You do not need to connect as much. So, the social world kind of shrinks around you. And before long, you kind of lose the opportunity, you lose the availability of other people, you lose friends, you lose family, you kind of, you know, you kind of bury yourself in a little hole in the ground, where you have your substance and you have maybe a couple of other people around you that also are involved in substances That’s it. The Coronavirus also is pushing us to burrow into a shrinking environment. We are sitting there at home by ourselves. And people are just losing even more the opportunity to connect outside of themselves, to extend their, their social web and to extend their possible the availability of getting your needs met by other people and other activities. So that in itself, I think is just the built-in hardship of this lock-down phase that we’re in.”

If you or a loved one or anyone in your circles is feeling at risk and struggling with mental health issues, please don’t hesitate to call National Suicide Prevention Lifeline https://suicidepreventionlifeline.org/ 1-800-273-8255.

Marc’s links are as follows:

Website: https://memoirsofanaddictedbrain.com

YouTube: https://www.youtube.com/channel/UCQvHfB1Kg4zStk5YwMYWH9Q Wikipedia: https://en.wikipedia.org/wiki/Marc_David_Lewis

ResearchGate: https://www.researchgate.net/profile/Marc_Lewis3

The Guardian: https://www.theguardian.com/culture/2015/aug/30/marc-lewis-the-neuroscientist-who-believes-addiction-is-not-a-disease
Videos that are awesome! https://youtu.be/aOSD9rTVuWc

Addiction and Trust: https://www.youtube.com/watch?v=e3p_LuTM73k

With Dalai Lama: https://www.youtube.com/watch?v=WZgx-6GOBAs
Order His Books!:
https://www.memoirsofanaddictedbrain.com/buy-biology-of-desire/
https://www.memoirsofanaddictedbrain.com/buy-it/

TSC Talks thanks Marc D. Lewis, PhD for sharing his wisdom with us.  All of our podcasts can be found at https://tsctalks.com/podcast/

TSC Talks Guest Brooke Alisha

TSC TALKS GUEST BROOKE ALISHA

I had the extreme honor of interviewing Brooke Alisha, TSC Advocate, Parent, Adult living with TSC, Adult Regional Coordinator for Adult Support Region 5, LeVel Promoter. She has quite a story of challenges and hurdles, traumatic events, and heartache but also MUCH resilience, inner fortitude, a heart of love and hope.

Diagnosed with Tuberous Sclerosis Complex (TSC is a condition that causes benign tumors to grow in different organs of the body) at the age of 18, Brooke gives us a picture, “I was very active. I was a cheerleader. I was in a precision ice skating team. I was very active in my church. I was in a traveling singing group. We had so many things. So for me, my life was.. always on the go and involved in something, a part of something and suddenly, I was on Darvocet and it literally brought me to my knees. I was in the middle of hair school. I had just started after I graduated. And I missed three months. I had to take medical leave because I couldn’t get up. I was afraid to hurt my kidneys and the stent and that whole thing and then on top of it being on that medication. That was the start of everything really for me.”

She talks of the utter devastation that followed post-diagnosis, “you looked at Google, you know, or Web MD or something. And it was like, awful. And I’m like, how can my life go from this to this? How am I supposed to (go on) and that it just made it worse”?

After moving in with her boyfriend and withdrawing, there was more challenging news, “And so when I went to go see about the cysts on my ovaries, I actually found out I was two months pregnant with my daughter. So I did have this on my ovaries, but they’re like, um, you’re pregnant, and we’re going to put you on Prozac because we don’t know if you’ll handle the baby or if you’ll keep it or anything”

To make things more challenging, she now had doctors weighing in, “She told me she advised an abortion and I wasn’t okay with that. It wasn’t how I grew up personally. And I thought, there’s a reason I’m having her. So, I’m going to just have her and I’m going to get through it. And if I lose her, then it’s meant to be I had to live with myself personally.”

Her baby daughter started having infantile spasms at 4 months and was diagnosed with TSC. She gives us a look at the inner experience of these circumstances and more challenges, “I guess I was so young, you know, I was scared to death of what was to come and she had just got diagnosed with Tuberous sclerosis complex, she has the seizures and they started to get more intense. And they were up to about 10 to 12 times a day, we started to have to digest that. Then I found out I was pregnant with my son, so it was a lot.”

Listening to Brooke and reflecting on my own experience, “I can relate to some of that, you know, I was getting pregnant and finding out at while I had other kids with TSC, and you know, I think back on those times that I don’t remember the details. It’s like talking to you, I just kind of remembered that craziness. You know, it was always like kind of living through at the moment and getting through the day and, you know, putting out brush fires one thing after the other, so I don’t know if it was like that for you, but I didn’t have a lot of like time to really reflect on what was happening and how I was. It was just so much action-reaction.”

Brooke shares more of her experience with her daughter, “she had brain surgery, a lot of people know the intensity of that, it’s a six-month thing. To get tested and all of this stuff done and, you know, it kind of all becomes a blur and then you spend about a month in the hospital because they’ve got to do two surgeries. And we did get social security disability income for that month that I was off, but it was exhausting. I had a son at home. She wasn’t going to the bathroom by herself. They told me about the social regression, they removed her right frontal lobe of the brain, all the executive decision making”

She also discusses waking up to an understanding of TAND, Tuberous Sclerosis Associated Neuropsychiatric Condition, both personally and with her daughter. 80-90% of individuals with a diagnosis of TSC will have some degree of TAND, manifesting in a myriad of different ways, encompassing the entire mental health diagnostic umbrella!

“And you just fix it and you figure it out. But you know, for the longest time, everything would defeat me. Because, you know, for me, 80% of people with TSC have a mental illness, TAND is something I didn’t even know what it was, and I feel like it’s not talked about enough. It’s not expressed enough. It’s not shown to families like okay your child might have TSC but look out for TAND, they need to be prewarned for this because you have no idea it will come hit you like a bus.”

Here’s an excruciating narrative outlining a TAND incident, “It seems like with these medications, so for her anti-psychotics make her psychotic. And we were like afraid to drive home. We were hoping a cop saw us and said let me take her from you. I have never been that mom that wishes anything on my children ever, ever ever in my life. I know I talked previously about not dreaming of being that mother or that Betty Crocker person, but I definitely am a person that when I have something, I go all out and I go all in. If I’m going to take care of something, I’m going to take care of it the way it needs to be taken care of. How do you take care of that? I didn’t know how to take care of that situation. That moment. Everybody’s lives are in danger. My son was being choked from the back. It was very traumatic.”

So clearly, Brooke is a survivor, with resilience like no other. She narrates example after example of circumstances that are unimaginable and yet she continues to rise.

“And you know, for the longest time I lived as that victim like …victim, victim victim and I decided I wasn’t going to live there anymore. And once you decide that you must be at a really big place where you’re like, you know, I’m ready. Because you’re going to get tested and you’re going to get tried, and it’s going to try to break you, but you have to just rise up really. But you have to be at that place, and I can’t tell you how to get there other than feeding your mind with happy things and good things. I started working out. So I started to try to do things that would help my mental health I went seek counseling. I just I started to really like being a hairstylist too, you’re also a therapist. So, you need to have an out. I needed a healthy out for sure.”

Brooke uses premium nutrition, continues to consult with her doctors, and this system has worked for her, Thrive, “a premium lifestyle plan to help individuals experience and reach peak physical and mental levels” and has great results. She continues to promote this product as a side business to supplement her work as a hairstylist/beautician and focuses on helping people feel beautiful inside and out. Having the opportunity to give her clients a little bit more in terms of offering a product she has had success with and believes in has been a wonderful way of infusing her work with her own lived experience and positive energy.

This episode is chock full of inspiration and hope despite multiple and ongoing challenges. I’ll leave you with this final quote, and encourage you to listen and share this incredible testimony to the power of the human spirit, faith and deep passion and love for her family, friends, committed to doing her best to push the needle of knowledge, education, and support for those living with TSC forward daily!

“I mean, there’s been lots of like little miracles, you know, like as you go on, like, Oh, she can read now. And for me, my tumors went from four and a half centimeters down to nothing. So yes, so that’s been amazing, but just the miracle of being 36 now and being told at 30 I’d be in a wheelchair like that’s a miracle. And when people see me and do that stuff, I want them to know that it’s never too late. You still have a life to live!” Bravo Brooke!

Brooke’s links:
Instagram: https://www.instagram.com/_brookealisha_/
Facebook: https://www.facebook.com/brookey21
Twitter: @BrookeAlisha
Adult Regional Coordinator-FB group: https://www.facebook.com/TsAllianceOfOhio/
TS Alliance Regional Coordinators: https://www.tsalliance.org/individuals-families/adults/adult-regional-coordinators/
Brook’s hair services: https://www.facebook.com/brookesbliss13hair/
https://www.facebook.com/thecolourpalettesalon/
Thrive/Le-Vel: https://brooke2330.le-vel.com/

TSC Talks Guest Brooke Alisha

Thank you for listening.  All of our podcasts can be found at www.tsctalks.com/podcast/

TSC Talks Guest Tiffani Goff

I was honored to interview Tiffani Goff, mother, blogger, author of Loving Tiara: A Memoiron the podcast. I followed Tiffani’s journey with her daughter Tiara who had Tuberous Sclerosis Complex for several years on Facebook as she shared glimpses from her day to day life with an incredibly challenging presentation of TSC, one that would ultimately claim Tiara’s life. I observed her posts in the days leading up to her passing and waited and watched for her to reappear on the other side of this loss. So many of we parents of loved ones affected by chronic life-threatening conditions live with the reality that we may lose our children at some point in our lifetimes and while this is not often the case, it happens regularly.

What Tiffani details is often heart-rending and painful, Treatment after medication after surgery after procedure. In Tiffani’s own words; “So whenever normally work, didn’t work for her. So it was a lot of trial and error. And I think for even families who have a child not as affected (by TSC) as Tiara, that’s the most important piece as a parent and/or caretaker is being able to identify; Is this a behavior from medication? What’re the side effects? What is the actual condition? How is my child feeling when they can’t communicate? That’s the hardest part and guessing and guessing. Am I doing this right? Am I doing this wrong?… but I kind of feel like the best advice, if I’m giving advice was kind of just gotta go with your gut. And you just have to really pay attention.”

Managing a condition such as TSC requires a parent or caregiver become incredibly knowledgeable about various aspects of medicine, A TSC case manager is a person that has learned to traverse multiple systems of care at the same time and bridge the communication gaps between these systems of care in order to make sure nothing slips through the cracks, amassing legions of knowledge about pharmaceuticals, insurance companies, social services, the mental health and behavioral health industry, dentistry, and more in order to insure that all treating are as close to on the same page as possible.

“And when I was dealing with Tiara after the first couple meds didn’t work, and I knew they weren’t working and I realized that some of the doctors, like when a doctor, in the beginning, who’s our first doctor, just picked up and left. I was like, Oh, my, I realized I’m responsible for her. So a doctor can just leave us and he was like our lifeline. And so that first made me realize I have to be in charge here. I can’t just depend, (on anyone) and then when you can’t get visits, so I just put aside my fear. I think that is one of the biggest things for anyone, whether not getting a new job or being afraid to speak up, is fear. And I just was …I am not going to. I was scared, but I was like, forget it. I’m not being scared.”

Tiffani continues throughout the episode to walk us through the timeline of her life managing Tiara’s TSC diagnosis, which got more involved, complicated and convoluted with each passing day but also impinged greatly on the lives of her family, She discusses these challenges as well. Challenges to find balance in the midst of chaos, challenges to stay connected to all of our family members and fulfill our “societal obligations” when our hearts are breaking in pieces daily.

“So I think I just knew Tiara was not going to live forever. So it was kind of like, I know she’s taking up so much time but these kids are here for a reason. I’ve got two other kids and I can’t drop the ball and I knew wasn’t going to be forever. You know, so it was kind of like God was keeping me going because they were going to be here. I knew they were going to be here a lot longer, and I just couldn’t abandon them. And my husband is the sweetest guy in the whole world. But he’s never filled out a piece of paperwork for school. He doesn’t know. He didn’t know any of that, you know, he didn’t even know how to find the volleyball schedule online. So, if I wasn’t going to do it, nobody was going to do it. Let me do it. And then when Tiara was here, then well, you know, I just felt like, I didn’t have a choice. And I was always trying to overcompensate. I would not sleep.”

Tiffani talks as well about coping throughout Tiara’s journey, and in the days following her passing, discussing her faith in this quote that I absolutely love for it’s authenticity, humor and deep wisdom, in my opinion; “And then after Tiara passed away, I went to mass every day. I mean, that’s what it is. There are so many downsides to being a Catholic. But one of the great things about being a Catholic is that you can go to any church in the world. And everyone’s saying the same prayer on the same day and standing up and kneeling. And it’s just like a meditation for me. And I don’t limit myself to the Catholic beliefs. It’s like, that’s my home. I love those people. I go there, there’s so many faults and so much that’s wrong. But it kind of just kind of keeps me centered. Because I do believe in mediums and psychics and I believe if you’re Buddhist, your God is still going to be the same as my God, I just like, being a good person and living with integrity. And doing the right thing is my God. And so, it just happens to be I find that at my church.”

Finally, Tiffani discusses poignantly the final days when Tiara was in hospice an she had an interaction with a hospice doctor; “so when we went home from that visit, on hospice when the hospice physician came over, and I was describing Tiara and her life, and she was only able to crawl (at this point in her life) and he was very quiet. It went on and on. And it was so quiet, and I said, Do you think that she’s going to pass away? Like, what do you think? And he said, “’ I’ve kind of never seen something like this. And I’m having a hard time telling you how I’m feeling (he said), because she is suffering so much, and I can’t believe you can still find joy for her.’” And he said, “I can’t believe you’ve made it this far”. I was like, Really? I mean, he couldn’t talk. I was like, so you think she’s going to die? And he said, “yeah, I don’t know how she’s still alive. We’re keeping her alive.” I was so baffling to me. But it was confirming that I wasn’t crazy because he was a total outside person who’d never met her. And just looking at her, and just the way she was struggling to walk or to breathe and how was like, “I need to let her go.”

The full episode is full of wisdom, humor, honesty, tears and a testament to the inner strength, faith and passion on Tiffani’s behalf, a final quote on the power of authenticity in written form, “it’s going to benefit our whole community. You know, because having this many people read about TSC and I’m sadly My story is, other people’s story. There are other families that live that same story. But they don’t have the way to get it out.”

Tiffani’s links!
Purchase the book! 😊 https://amzn.to/2s7tMLg
Tiffani’s amazon page: https://amzn.to/2QDbvPo
Website: https://tiffanigoff.com/
Facebook: https://www.facebook.com/TiffaniGoffAtHome/
Twitter: https://twitter.com/twigdecor?lang=en
Instagram: https://www.instagram.com/tiffanigoff/?hl=en
YouTube: https://www.youtube.com/user/tiffanigoff
LinkedIn: https://www.linkedin.com/in/tiffanigoff/
https://www.goodreads.com/book/show/48912091-loving-tiara
Indiebound.org
Barnesandnoble.com
https://nonfictionauthorsassociation.com/directory/25788/tiffani-goff/

Information on Tuberous Sclerosis Complex: https://tsalliance.org